Archive for the ‘healthy living’ Category

It’s About You: Lynn Folkman’s Story

September 4, 2014

emailHeader760x1604_BlogResizeAt this year’s annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, we’re not just providing you with the unique information you seek; we’re offering you the chance to connect with others and learn that you’re not alone.  While being treated for breast cancer, Lynn Folkman went to her first-ever LBBC fall conference in 2009. She blogs about that day and the importance of creating the conference experience you want. Lucky for us, Lynn joined the team at Living Beyond Breast Cancer in 2012 as our Community Engagement Manager.

Lynn Folkman LBBC Fall ConferenceIt was fall 2009 – I had just completed chemotherapy, radiation therapy and was a few months into my year of taking trastuzumab (Herceptin) and I was exhausted. I found out about the LBBC Annual Fall Conference through one of my support groups and the thought of attending alone was too overwhelming for me, so I agreed to attend with a friend I met during treatment.

The conference that year was held at the Pennsylvania Convention Center. I was a bit nervous about attending, as I had previously worked at the Convention Center and still knew quite a few people there, and they did not know that I had breast cancer. As well, the tables were turned; I was a meeting planner and instead of producing the event, I was experiencing the conference as an attendee.

I was in an emotionally raw and vulnerable state. I was at the point in my treatment where I often wondered if or when I would ever feel like myself again. I was tired of hearing the comment, “You look really great!” I longed for a day where I could be invisible and no one would know that I had breast cancer. However, I was still mostly bald and there was no masking what I was currently experiencing. I was apprehensive about having to endure glances from people who knew me, which would be mixed with a combination of sympathy and trepidation.  They were used to the vivacious energetic Lynn, not the exhausted Lynn.  How could I possibly fake it when I did not even have the energy to do so?

A few things occurred that day which continue to deeply comfort my mind and spirit and reinforce the special place in my heart for the LBBC Fall Conference. Since it was my first time attending, I had no idea what to expect. The day began with the opening session, the speaker welcomed the group and then asked people how far out they were from the time of their diagnosis. When your year was called, you were instructed to raise your hand. One year and under, my hand went up. I don’t remember the exact breakdown, but it went something like this: 1-5 years, 5-10 years, 10-15 years, more than 15 years and so on.  What I do remember is being overwhelmed as I heard cheers and looked around the room and saw so many raised hands and proudly smiling faces.   (more…)

It’s About You: Kate Garza’s Story

August 26, 2014

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KateGarza2 for 5 28Kate Garza is back with a new blog post for our fall conference blogging series, It’s About You. The yoga instructor, writer, wife and mother of three discusses the “breast cancer journey” concept, while discussing her own and her anticipation of Breast Cancer Today: Individual Treatments, Shared Experiences.

Everyone calls it a journey – the breast cancer journey. And if I weren’t so sick of that term, I would use it, too. It is descriptive to a point, and it allows other people to remember that you are not living the life you had in mind anymore. But this so-called “journey” is really more the life equivalent of being kidnapped, thrown into the trunk of a car and driven in the dark to an unknown location. That’s the image that flares in my mind anyway, when I hear “journey with breast cancer,” a junket with only sketchy clues about where you may end up. 

I was diagnosed with stage II invasive breast cancer at age 53, almost 2 years ago now, when my kids were 15, 16 and 17 years old. Life would have been complex enough with three kids moving up and out, but throw breast cancer on top of that project and I had more moving parts than I could track with sophisticated software. 

I had a fairly garden variety diagnosis of estrogen receptor-positive/HER2-negative breast cancer. I followed the standard treatment with lumpectomy, 8 cycles of chemo and 30 doses of radiation therapy. It was the most difficult health crisis I had run across in my life and treatment left me exhausted and brain-fried, but grateful that I traversed without complication. I finished a week before number one graduated from high school. After a month off for R&R, I began taking an aromatase inhibitor (AI), letrozole. 

After 3 months of difficult joint pain side effects, I switched to anastrozole. Again, the difficulties with pain and mobility arrived, but I stayed with the second medicine for 6 months until, completely frustrated and full of pain with every movement, I gave up. I was done. I couldn’t see the point of prolonging a life that felt this bad. Did I mention that I am a yoga instructor? I couldn’t move. Not even enough to practice the yoga that might help me feel better. And working, in my chosen profession, was out of the question. So by the time my second child graduated this past June, I was 2 months into my medication vacation and starting to feel much better. I could move again. Pain with walking and the sleepless nights were beginning to fade away.  (more…)

Getting On Track – LBBC’s Reimagined Fall Conference

July 30, 2014

emailHeader760x160Our annual fall conference features three tracks because breast cancer is not just one disease. Clifford A. Hudis, MD, chief of the breast medicine service and attending physician at Memorial Sloan Kettering Cancer Center in New York City, wrote this blog post about the reasons for these tracks and how breast cancer treatment became more individualized. A member of LBBC’s medical advisory board, Dr. Hudis will lead our morning plenary session on metastatic breast cancer. 

Hudis_lbbcblogpostGiven LBBC’s recognition that not all breast cancer is the same and not all patients need the same information, it is natural to see that the annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, is organized in tracks that enable participants to most efficiently focus on what they find to be most relevant. 

Not Just One Disease

Starting with oncology pioneer George Beatson’s 1896 report that some, but not all, women with advanced breast cancer responded to treatment that reduces estrogen in the body, it was clear that we confront more than one, uniform disease. The subsequent description of the estrogen receptor by cancer researcher Elwood Vernon Jensen in 1958 simply allowed us to test for what we already knew – that some cancers are more or less likely to respond to hormone therapies.

The more recent description of the human epidermal growth factor receptor–2 (HER2) and the development of effective treatments that target it added another dimension to “binning” breast cancers. With effective hormone and anti-HER2 therapies we can no longer pretend that cancer is cancer is cancer. One size does not fit all, and one disease is not the same as another.  (more…)

Do You Have Any Idea How Beautiful You Are?

May 17, 2014

Musser_Barbara_2014Breast cancer can drum up many complex emotions and thoughts for those who are newly diagnosed, especially around body image. Barbara Musser, CEO and founder of Sexy After Cancer, writes about the importance of defining your own beauty and invites you to learn how to do this by joining us for our free webinar at noon ET/11 a.m. CT on Tuesday, May 20, held in partnership with Susan G. Komen of Greater Kansas City

Dealing with a breast cancer diagnosis and treatment is a big challenge that goes on for quite a while. On top of that, it’s easy to feel like less of a woman, especially with altered or removed breasts, instant menopause resulting from chemo or hormonal therapies and other physical changes that can happen.  There’s not a lot of conversation about our body image, self-esteem and self-love and our intimate and sexual lives. And yet these are the subjects that have the most to do with the quality of our lives.

It’s the elephant in the room that no one mentions. Partly it’s because these aren’t easy topics to broach and partly because we don’t know to ask about them if we don’t know what to expect. You may have experienced this spiral. (more…)

Blog For Mental Health 2014: The Emotional Impact of Breast Cancer

May 14, 2014

mentalhealthblogdayToday is Mental Health Blog Day 2014, a Mental Health Month initiative from the American Psychological Association. As a contribution to this day, we wanted to acknowledge the emotional impact of breast cancer, in addition to sharing resources and letting you know that you are not alone.  

Whether you just heard the words “you have breast cancer,” are years beyond treatment or living with metastatic disease, it is likely that you experienced or continue to experience a range of complex emotions due to this major life change. At LBBC, we are dedicated to helping you cope with or manage these feelings by connecting you with trusted breast cancer information and a community of support.

In recognition of Mental Health Month and Mental Health Blog Day 2014, we wanted to highlight programs, resources and inspiring personal stories by men and women affected by breast cancer.

First and foremost, we have a toll-free Breast Cancer Helpline (888-753-52220) answered live from 9 a.m. to 9 p.m. ET. Staffed by volunteers who have been diagnosed with breast cancer, our Helpline will connect you with someone who cares and knows what you’re feeling. Call today or when you’re ready!

We also have some upcoming programs as well as podcasts and presentations of previous events, many of which you may find helpful: (more…)

Second Saturday Breast Cancer Six-Word Memoirs: April 2014

April 12, 2014

Welcome to the launch of Second Saturday Breast Cancer Six-Word Memoirs! Check the new editions below, and learn how you can contribute a micro-memoir of your own.

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Earlier this week, we announced that we were making the breast cancer six-word memoir campaign a monthly feature here on the blog. We proudly present five new six-words: (more…)

Yoga on the Steps: Philadelphia Kickoff!

January 15, 2014

Yoga Peach YOTSReturning blogger, yogi and friend of LBBC, Keli Engelson -aka Yoga Peach- dishes about her excitement and passion for Yoga on the Steps and raising funds for people affected by breast cancer. Want to join in? Register Today!

On May 18, 2014 LBBC will host it’s signature education and fundraising event Yoga on the Steps on the historic steps of the Philadelphia Art Museum.  The one hour class is an all-levels yoga class and afterwards participants are encouraged to attend the Healthy Living Expo where local and national health and fitness vendors display their products and services.   Information about local area nonprofit and service organizations is also provided. Yoga on the Steps educates communities about healthy living and quality of life issues and all funds will benefit Living Beyond Breast Cancer’s education and support resources.

I’m looking forward to this year’s event.  I am extremely passionate about yoga and being able to volunteer, raise funds and share something I love with the community to support LBBC is meaningful to me. This will be my third year to attend Yoga on the Steps.  The energy of nearly 2,000 people gathering on the steps of the art museum to support LBBC is an exciting and moving experience. It is extremely fulfilling to combine health and wellness for such an important cause so I hope to see even more people at Yoga on the Steps in Philadelphia this year!

Keli Engleson, “Yoga Peach” is a registered yoga instructor, certified birth doula, and triathlete.   She also arranges destination weddings and yoga retreats in Belize.  Keli enjoys blogging about yoga, health and wellness.  She also shares healthy recipes and personal stories through her journey in yoga and fitness.  http://www.yogapeach.com

Breast Cancer Awareness Month Recommended Reading, Part III: “The Emperor of All Maladies”

October 31, 2013

LBBC’s writer and web content coordinator Josh Fernandez concludes our three-part book review series for Breast Cancer Awareness Month (BCAM) with a write-up on “The Emperor of All Maladies: A Biography of Cancer.” The Pulitzer Prize-winning book was written by Dr. Siddartha Mukherjee, who spoke at our 2013 Annual Fall Conference: News You Can Use. 

The Emperor of All Maladies: A Biography of Cancer (Written by Siddartha Mukherjee, MD, PhD, published by Scribner, 2010)

After having to read Edward Jenner’s “Vaccination Against Smallpox” during my sophomore year of college, I thought I would never again pick up, let alone enjoy, another nonfiction science book. Despite the importance of that text, and my nerdy ways — I enjoy reading sociological and nutrition science text books, balancing chemical equations for fun and I recite “Battlestar Galactica” and “Buffy the Vampire Slayer” episodes by heart —nonfiction science books had been ruined for me.

Nearly 6 years later, I picked up a copy of Dr. Siddartha Mukherjee’s Pulitizer Prize-winning book, “The Emperor of All Maladies: A Biography of Cancer.” About 40 pages in, I was captivated by Dr. Mukherjee’s prose and storytelling. This renewed my appreciation for nonfiction science narratives. (more…)

Unveiling the Cancer Insurance Checklist!

September 27, 2013

As we find ourselves just a few days away from the opening of states’ Health Insurance Marketplaces/Exchanges established as part of the Affordable Care Act (ACA), Living Beyond Breast Cancer is pleased to announce the launch of the Cancer Insurance Checklist, a resource developed in partnership with 18 other cancer and healthcare advocacy organizations, with the generous financial support of Novartis Oncology. 

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An estimated 7 million uninsured or underinsured people will be using the Health Insurance Marketplaces/Exchanges  to obtain health insurance coverage in 2014. Knowing this, Living Beyond Breast Cancer is pleased to present the Cancer Insurance Checklist , a tool designed with several partner organizations specifically to help those with a history of, at risk of developing, or presently diagnosed with cancer find the insurance plan within their budget that best meets their healthcare coverage needs.

(more…)

Our New Vision and Mission

August 20, 2013

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This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC


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